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LFS Association

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So far LFS Association has created 48 blog entries.

A prospective study of Annual Whole-Body MRI as Part of a Multimodality Screening Program for Individuals with Li-Fraumeni Syndrome

US-based researchers assessed the performance of (non-contrast) annual whole-body MRI as part of a multimodality screening for individuals with Li-Fraumeni syndrome for early cancer detection.  These researchers concluded that, in conjunction with other methods endorsed by LFS guidelines, annual wbMRI substantially contributes to the detection of localized, asymptomatic cancers across the spectrum of LFS.   The

Optimizing whole-body MRI for early cancer detection in Li-Fraumeni syndrome

New prospective data from a German study indicate that annual whole-body MRI for LFS surveillance could be shortened and may not require contrast agent while still detecting new cancers. Larger studies are needed before this becomes standard practice to ensure reliable detection across the entire, diverse LFS tumor spectrum. The goal is a patient-friendly,

By |2025-11-10T16:26:11-05:00October 29th, 2025|LFS News, Papers & Research Literature, Reference|0 Comments

LFSA – Africa! “Rare genetic disorder that helps cancer run in families”

Lakita at the LFSA's Youth Workshop in 2023 LFSA - Africa's Media Relations Specialist Joel Magu has published another article in Kenyan news for LFS awareness in Africa. Here is told the story of loss and endurance by LFSA - Africa's Communications Director Joyce Mwangi and her daughter, Lakita. Also told is the

By |2025-09-17T15:45:08-04:00September 17th, 2025|Featured, LFS Family Stories, LFS News, News Media|0 Comments

Facing Sarcoma: Science, Loss, & the Power of Advocacy Podcast

Hosted by Upstate Medical University during Sarcoma Awareness Month, LFSA’s Kathy Higgins, Director of Education and Awareness, sat down with orthopedic oncologist and clinician-scientist Dr. Tim Damron regarding sarcomas and Li-Fraumeni syndrome (LFS).  The conversation illuminates the complexity of LFS sarcomas and the importance of early intervention, beginning with a proper biopsy.  Also discussed

By |2025-08-01T12:15:17-04:00August 1st, 2025|Podcasts|0 Comments

p53 Prophylactic Therapy for Cancer Prevention

Cancer Resilient Elephants The tumor suppressor Tp53 is the most mutated gene in cancers.  Germ-line variations in Tp53 lead to cancer predisposition, as noted in the Li-Fraumeni syndrome (LFS) carriers. Currently, no options are available to delay or prevent cancer development in this population.  Conversely, animals such as elephants, are relatively resistant to

New 2025 AACR Screening Guidelines for Li‑Fraumeni Syndrome Now Available

The 2025 updated screening recommendations for individuals with Li-Fraumeni syndrome (LFS) are now available from the American Association for Cancer Research (AACR), as published in Clinical Cancer Research on May 15, 2025. These evidence-based updates offer important changes to surveillance protocols aimed at improving early cancer detection and care for individuals living with LFS. The

Optimizing shared decision-making for risk-reducing mastectomy in women with Li–Fraumeni syndrome using patient-reported outcome measures

Li-Fraumeni syndrome (LFS) researchers in Brazil studied factors in determining quality of life issues for women living with LFS who consider risk-reducing mastectomies – one of the few available options to reduce cancer risks in women beyond surveillance.  When reviewing this study, keep in mind that the majority of participants in the study carry the

Attention Young Adults between 18-29 living in the US of A!

Would you like to participate in a research study at the National Cancer Institute that is developing a mental health resource for young adults with Li-Fraumeni syndrome? Participants will receive a $150 electronic gift card for their participation. Check out this link to see if you are eligible: https://bit.ly/YA-MSC-Study. Scan the QR code or contact

By |2025-06-03T13:27:00-04:00June 3rd, 2025|LFS News, Study|0 Comments

LFSA Co-Founder Debbie Soprano Honored by Boston Children’s Hospital

The Li-Fraumeni Syndrome Association (LFSA) is proud to announce that Co-Founder and Board Member Debbie Soprano has been recognized with the 2025 Employee Community Volunteer Award from Boston Children’s Hospital. The award honors Debbie's outstanding commitment to volunteerism through her work with LFSA, where she currently serves as Marketing and Development Chair. Soprano, who

By |2025-06-02T16:59:31-04:00June 2nd, 2025|LFS News|0 Comments

Annual Whole-Body Imaging Contributes to Early Cancer Detection in Patients With Li-Fraumeni Syndrome

Researchers at the Dana-Farber Cancer Institute concluded that annual whole-body MRIs contribute substantially to detection of asymptomatic localized cancers among individuals with Li-Fraumeni syndrome (LFS).  Though interval cancers remain common, Dr. Asaf Maoz, the author of the study, stated that a whole-body MRI serves as a crucial test modality for individuals with LFS that should

By |2025-06-03T13:57:14-04:00June 2nd, 2025|LFS News|0 Comments
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